Wednesday, June 30, 2010
June is National Myasthenia Gravis Awareness Month, and today is the last day of June. I consider myself an advocate of sorts all year round, but try to hit it harder in June.
Imagine: that you wake up every morning with a pocket of change. Sometimes it's full, sometimes it's not so full. Everything you do every day costs something. So say this morning you woke up with a quarter, 2 dimes, 2 nickels, and 3 pennies. Getting out of bed, downstairs, making coffee and breakfast and the pennies are gone. Make breakfast for your son, get him dressed, going potty 3 times in 12 minutes, and put the dogs out. Dime number one: adios.
Your husband wants the dishes washed and table cleared off every day. Dime number two: arreviderche. Your son wants you to read to him. He wants 5 stories. Both nickels disappear. You here it is, not even noon, and all you have left is a quarter. You have laundry to do, cleaning to do, other chores just straightening and organizing, you have a very active almost 4 year old and 3 dogs to take care of all day, you'd LIKE to do something for yourself, spend some time writing, you'd LOVE to take a shower, have lunch with a friend, you'd LOVE to make dinner...you'd really like to run to the store...but you can do ONE of those things, and your coins are gone, and so is your energy. Game over. But yet you have to somehow carry on for the rest of the day.
Imagine: that you breathe through a hole in your neck. That you need to do breathing treatments and change this trach and clean it twice a day and try to keep it from getting sore or infected. And sometimes it hurts.
Imagine: You try to grab a can of pop. It falls to the floor. You try to cut your food with a knife; you have to ask for help.
Imagine: you can't speak clearly enough for people to hear you on the phone and you have to quit your job.
Imagine: sometimes you can walk up the stairs, sometimes you can't. Sometimes you can take a shower by yourself, more often you can't.
Imagine: your independence is all but gone. The thing you love most, to sing, is stripped away. You love to read, but can't read for long periods of time because you get double vision.
Imagine: you can't go outside when it's too hot, humid AT ALL, or too cold. Because you have a trach, you can't swim.
Imagine: many of your friends don't know how to handle you, or think things "aren't that bad", so they don't hang around you anymore.
Imagine: you either receive judgement or pity, neither of which you want.
Imagine: you have chronic pain from all over muscle weakness and atrophy.
Imagine: YOU know you are the same person in your brain and in your heart, but your body has completely betrayed you.
Imagine: you lie on the couch...oh, wait...can't do that; you can't breathe if you do.
Imagine: some people think you're a hypochondriac.
Imagine: you become depressed. You are such a social person, but you can almost never go anywhere independently. You are isolated.
If you can imagine all of these things, you will know what it's like to have Myasthenia Gravis. There is no cure. If you are interested in learning more, or donating to help find a cause for this horrible disease, please go to www.myasthenia.org, the MGFA website.
Monday, June 28, 2010
I am not a basketball fan. So it’s a good thing this book had little to do with basketball. Lucille O’Neal writes about her life growing up with divorced parents, living with her grandparents, and having a not-so-wonderful childhood. She also shares the joys and fears of her son Shaquille’s rise to fame and fortune.
I really enjoyed reading about Lucille’s life. She is a wonderful story-teller. It was fascinating to see a mother’s reaction to her son getting rich and famous almost overnight.
That's how I feel today. It's Monday. I'm tired. (What is with waking up every hour to pee? I know I drink a lot of water, but that was ridiculous!) Jacob seems to have forgotten how to do everything he has learned to do independently: getting dressed, going potty on his own (every. five. minutes.), feeding himself....Sometimes I wonder about that child. Genius one second, scatterbrained the next. Oh, wait, that's just like me!
Blackie is doing much better, thank goodness. The pain medicine works wonders, and he is once again sleeping through the night. I know this is all normal mom stuff....I just wished it stopped there.
My fibro has really been acting up...could it be weather related? I have been so focused (not by choice) on the diabetes and MG that I don't even really know that much about what affects fibromyalgia. And frankly I don't have the time or energy to find out.
I'm trying to write...but I never have time! (Yah, I know....welcome to life). I asked my husband if he would just please support my writing, and he says "I always have honey!" So I try to write a little bit at night when he's home to watch after Jacob, and I get: "Are you gonna be one that thing all night?"
OH...this is my favorite: a couple of years ago, to TRY to make my point about my hubby working outside too much and not spending enough time with Jacob, I was like: "If something happened to him, or me, would you be like, 'Gosh, I wish I would have gotten one more project done,' or 'Gee, I wish I would have spent more time with my son?'" Which was NOT well-received, let me tell you.
So now I get hear "If something happened to me or Jacob would you say, 'Gee, I wish I would have written one more paragraph, or Gee, I wish I would have spent one more hour with my family?'" I was like, I'm already with him 24/7, what's your point?? "Family time" by the way, is sitting on our butts watching TV. It's not like we bond over Whale Wars for sh!ts sake.
Ug. Sorry. I just get tired of fighting for every single thing. Breathing. Walking up the stairs. Getting a MOMENT to myself. Putting the dogs out. Not being in pain. Getting hubby to spend time with us... time that matters. I have ZERO energy, and I'm supposed to be a wife and mom. And friend. And sister. And daughter. And financier. And psychologist. And housecleaner. And medical genuis. And playmate. And writer? Yah. Right.
Anywho. Sorry for the downer. Just frustrated.
Saturday, June 26, 2010
However, our local Pamida store had CRAZY sales, promos and coupons today. How could we NOT go? They had 3 coupons...50% off one soft home item (we got an $80.00 floor rug for $25.00 by the time all was said and done!) 50% off any apparel item (Got a shirt that was already marked down, original price was like $25.00, got it for $8.55) and 50% off any sporting goods item. Doug got a tent for Jacob so they could "camp" in the back yard.
The first 100 people got Pamida bags with a snack bag of chips in it, a pen, a coupon for sierra mist, and a Pamida Bucks certificate for $5.00 or $10.00. One bag had a $100.00! I didn't hear any screams, so I don't know who got it.
Now, I live in a town (Allegan) where the TOTAL population is like 5500 or something. On Black Friday we went to Pamida to get an awesome deal on a big on a TV, and there were like 6 people in line. So I'm thinking, No worries...there won't be that many people there. Oh. My. Word. I was soooooo wrong. We had to park in the dirt, but we still were the first 100 to get bags (kids couldn't get them or we would've been s.o.l.)
You walk in and they have free cookies and water, more copies of the coupons in case you forgot yours or something. They ran out of carts though so I had to take one with a big ol baby seat on it. Then I put the rug in, so you can about imagine what I looked like.
Anyway....then, when you check out, you pop a balloon, and get whatever is in there. Most commonly it was 5% off total purchase, or they had 20% off, even one that said entire purchase free! Again, no screaming, so I don't think anyone got that while we were there.
The store manager there, Gerald, is awesome! (No, we're not related!) He's SO nice...it's like he genuinely cares about every single person that he comes in contact with. I've never seen him impatient or angry (and we are there a LOT!) He runs a tip top shop!
I should say that all of this information is purely my opinion, I'm not being paid to review anything or whatever. I mean, I'm just braggin' on the deals we got! Yah, there was a little chaos, but we saved MORE money than we spent. You GOTTA love that!!! So if you're ever in Allegan, check out Pamida while you're here!
It was really hot in there though...very humid today, and LOTS of people. We were there for about an hour and a half, (didn't want to miss anything!!!) so I am exhausted beyond belief. Humidity always slows me waaaay down, but then shopping on top of it....plus I was already weak from yesterday. Ug. Oh well. I'll live.
It was a fun morning...and Jacob was really well behaved. Other kids were screaming and hollering... Jacob just hung out. Asked for everything in the store, but hung out. Good times!
Friday, June 25, 2010
I have never had one iota of interest in Britney Spears or her family, but the way Lorilee talked about her, she just sounded like someone I wanted to "meet." Lorilee told us a lot about what we DIDN'T know, hear, or read about in the tabloids about the Spears family. She spoke of Lynne's deep faith in God, and how that ept her going through the tough times. I was intrigued to say the least.
Lorilee also told of the lessons she learned while on the journey through co-writing this book.
She learned to "live loved." That God is our advocate. That he is FOR us, supports us, chooses us. God loves us. So much. Imagine the person you love more than anyone on the planet. Think about how you feel about them...and multiply that times infinity. I think my favorite thing about Lorilee is that she said she was a word geek. I LOVE that! I am a self-proclaimed "word nerd!"
She also learned to "fully rely on God." This is something I can totally relate to. Having a chronic illness means living moment by moment. And I truly mean "moment" not like experience, but like minute-to-minute. I do not know how I will feel when I wake up, or 5 minutes after that, or 5 minutes after that. So I have learned (well, almost!) how to go with the flow! But more importantly, I have learned that God is in control, and He will sustain me.
I will let you know how I like the book, but go check out Lorilee's website. She's written lots of other books; some on parenting, some on baby names....just go check it out.
Here's hoping or a healthy weekend for all!
Thursday, June 24, 2010
Wednesday, June 23, 2010
His first response was : mood swings. For example, some of the medications I'm on, particularly prednisone, makes my moods swing very dramatically at times. This past year I've not not-so-great a year. I've been on higher doses of prednisone, and there were lots of anger issues and lots of crying. Also, I do not handle disappointment well. I'm getting better. But he hates seeing me get my hopes up and then not be able to do what I had planned.
He also doesn't like how it effects me when people judge me one way or the other. Many look at me and just see a mostly normal looking person, with a trach, maybe thinking I had throat cancer. (Oh, poor thing, kind of thing). Or, they look at me like I'm normal, and I'm just taking up the handicapped spot because I am lazy. That one BURNS my butt. He also notices when people treat me like a sick person...acting like I can't do a THING for myself...and they talk really loud too, which cracks me up.
I asked my husband what the worst thing was. He said not knowing what's going to happen five minutes from now. "One minute she's sitting here typing, and the next she could have severe double vision, sudden neck weakness and arm weakness, and not be able to drive home."
I think he really worries when I go out, especially by myself (without Jacob) not that that really happens TOO often...because he says my pride won't let me call him if I needed help. He's probably mostly right. : )
I asked him what his primary emotion was regarding me, my health, and our lives with my health. The overwhelming response was worry. Worry that I will be okay, that I will be able to do what I need to do with Jacob, worry that we don't be able to complete plans we've made...
So there's a tiny bit of the point of view from a caregiver of a chronically ill person. My husband does NOT talk about emotions, and I had to ask 1 question 10 different ways before he answers. It's like pulling teeth! But I think he did a pretty good job.
Tuesday, June 22, 2010
Having MG has interferred with so much in my life. I'm finally at the point, though, where I think I can manage writing through it. I've always wanted to return to work, but I just am not physically able get ready and GO to work. I can't imagine going to a workplace now, with Jacob and all. A writing career will be awesome, because it's flexible, and I can work on it when I'm feeling the best. The hardest part is carving out specific time, without taking anything away from Jacob.
But I just need something for me, ya know? Is that selfish? Sometimes I think it is, but other times I'm like, hey....I need this for my sanity!
So...wish me luck!
Monday, June 21, 2010
So my instructions are pretty simple and straight forward:
1. Thank the person who gave you this award. -- Check►
2. Share up to 10 things about yourself. Short & sweet
3. Pass the award along to up to 10 bloggers who you have recently discovered and think are fantastic!
4. Contact the bloggers you've picked and let them know about the award. -- of course!!!"
So here are my 10 things!
1. I love to write.
2. I have a neuromuscular disease called myasthenia gravis (June is National Myasthenia Gravis Awareness Month.)
3. I have one son who is the light of my life. Only God could have blessed me with such an amazing child.
4. I have a husband who loves me and protects me and provides for me. I love you honey.
5. Joanna (my BFF) intoduced me to the world of blogging! YAY!! Thanks, girl!
6. I am trying to launch a successful freelance writing career. (It's tough!)
7. If I could live anywhere in the world, it would be Colorado. I would HAVE to hav a handful o people to go also, however : )
8. When I was little I wanted to be a medical professional (doctor, surgeon)...now I AM in the medical profession....way more than I want to be....as a PATIENT!
9. I have met some of the most amazing women blogging. God-fearing, wonderful, supportive friends. Thank God for technology!
10. My husband will be 40 in a few weeks...and I have to figure out how to celebrate!!
Okay....now to the 10 bloggers!
1. Joanna at Bugs In My Teeth. Okay, so she's not "recent" but she's amazing.
3. Courtney at Punken
4. Chrissie Lee at In The Wings5. Ashley at A Young Wife's Tale
6. Stacy at Random Musings From A Single Gal
7. Teresa at Too Many Heartbeats
8. Pam at Embracing Life
9. Tinika at By His Design
10. Ronica at The Ignorant Historian
Hope everyone has a BLESSED week!
Saturday, June 19, 2010
I swear, we've had storms for DAYS and the power never even flickered. Then, last night we have this crazy, tree-bending wind, sky-blackening clouds, scare-the-pants-right-off-you storm that lasts all of 15 minutes, and we lose power for three days. AAhhhhhhhhhh! It's such a pain. Suction machine, nebulizer, oxygen. Power, power, power.
I'm so tired. I do NOT sleep well when there's no oxygen concentrator and oxygen machine running....fan....etc. Oh well.
Blackie got to come home today, so that was some good news. He's doing pretty good. It's a little sad. He's normally so active and spastic and now he has to just lay...for SIX WEEKS!!!
Well, that's it for now....hopefully tomorrow I'll be comfortable in my own home (thankfully Doug's work has a wonderful conference room with lots of work space and a huge tv. They even have a shower upstairs! So I'm clean anyway!)
Here's to tomorrow being a better day!
Friday, June 18, 2010
JUST. FOR. ONCE. could something go smoothly for like, oh, more than 15 minutes? Yes, I'm venting. Today, I don't care. The past few weeks have sucked. Just sucked. I'm tired of everything being hard. I tired of fighting my illness for control of my body. I'm sick to death of not being able to do things with my family. Yes, I'm having a tantrum. NO, I don't give a crap. There are days when I just need to let some of this crap out or I'll explode. And I'd rather do it here than at my son.
I want to be able to go where I want when I want. I want to just be able to get in the car with my son and go somewhere. Anywhere. To a friend's house. To the store. Just for a drive. But 95% of the time I'm too exhausted to drive after I get everything in the car.
Inside I am the SAME. PERSON. I'VE. ALWAYS. BEEN. I think some people don't get that. My mind is the same. My heart is the same. My desires and dreams and hopes are the same. Only now, my body is holding all of those things captive.
You know, people complain about the STUPIDEST things. I overheard someone in the grocery store complaining because they changed the color of the packaging on their store brand products.
I remember when Jacob was in the hospital, full of tubes and IV's and on the vent, the church we attended at the time was completely up at arms, and some people actually left over a softball game.
I overheard someone bitching about the price of cigarettes. I have a $#*&!%# hole in my neck and struggle to breathe, and you're not only poisoning yourself but also complaining about the cost?
Are you KIDDING me???
I'm just fed up. I'm not pointing any fingers at anyone who reads my blog, so I hope no one takes offense. But if it makes anyone stop and think, so be it. There really are people out there who have more to worry about than what their hair looks like that day, or what shoes to wear.
I hate MG.
I want to be healthy.
I hate having a trach.
I want to gulp huge breaths of air, and talk without having to cover a hole in my neck.
I hate being "disabled."
I want to be able to work, and CHOOSE whether I want to or not.
I hate being dependent on other people.
I want to be able to take care of myself, my home ad my family without the whole flippin' wold having to help.
I hate having to say no so much more than I can say yes.
I'm. just. so. sick. of. it.
Thursday, June 17, 2010
Wednesday, June 16, 2010
Tuesday, June 15, 2010
A reporter (a lovely young lady) from the Allegan County Paper was there to take a picture of the mayor giving me the proclamation, and I spoke with her for a few minutes before the meeting. What wonderful support! It was awesome....so thank you again, City of Allegan for your support!!
Monday, June 14, 2010
The Allegan County Press will be there, and it should be in Wednesday's paper, so I'll have to make sure I get one. I think they will just take a picture of me with the proclamation...I don't know if they'll ask questions or anything. I guess we'll see!
I'm a little nervous...only because my speech can get bad if I'm really nervous, and I'm not really having a stellar day already. But I suppose that's good, because the worse I am the more impact it will make! (Hopefully I won't have to make a speech anyway!!!)
I'll let you all know tomorrow how it goes!
Sunday, June 13, 2010
Stress is the WORST thing for MG. My eyes have been terrible, my legs are super weak and my arms are weak as well. I had a very small freelance writing job I had to quit (long story)....
I'm just asking that if you pray, please say a prayer for me tonight. Lord knows I need it. I need strength. I need perseverance. I need patience. I need the knots in my gut to go away and the tears to stop falling down my cheeks.
Friday, June 11, 2010
If you are 30, or older, you will think this is hilarious!
When I was a kid, adults used to bore me to tears with their tedious diatribes about how hard things were. When they were growing up; what with walking twenty-five miles to school every morning.... Uphill... Barefoot... BOTH ways… yadda, yadda, yadda
And I remember promising myself that when I grew up, there was no way
I was going to lay a bunch of crap like that on my kids about how hard I had it and how easy they've got it!
But now that I'm over the ripe old age of thirty, I can't help but look around and notice the youth of today. You've got it so easy! I mean, compared to my childhood, you live in a Utopia!
And I hate to say it, but you kids today, you don't know how good you've got it! I mean, when I was a kid we didn't have the Internet. If we wanted to know something, we had to go to the library and look it up ourselves, in the card catalog!!
There was no email!! We had to actually write somebody a letter - with a pen! Then you had to walk all the way across the street and put it in the mailbox, and it would take like a week to get there! Stamps were 10 cents!
Child Protective Services didn't care if our parents beat us. As a matter of fact, the parents of all my friends also had permission to kick our butt! Nowhere was safe!
There were no MP3's or Napsters or iTunes! If you wanted to steal music, you had to hitchhike to the record store and shoplift it yourself! Or you had to wait around all day to tape it off the radio, and the DJ would usually talk over the beginning and mess it all up! There were no CD players! We had tape decks in our car. We'd play our favorite tape and "eject" it when finished, and then the tape would come undone rendering it useless. Cause, hey, that's how we rolled, Baby! Dig?
We didn't have fancy crap like Call Waiting! If you were on the phone and somebody else called, they got a busy signal, that's it! There weren't any freakin' cell phones either. If you left the house, you just didn't make a call or receive one. You actually had to be out of touch with your "friends". OH MY GOSH!! Think of the horror... not being in touch with someone 24/7!!! And then there's TEXTING. Yeah, right. Please! You kids have no idea how annoying you are.
And we didn't have fancy Caller ID either! When the phone rang, you had no idea who it was! It could be your school, your parents, your boss, your bookie, your drug dealer, the collection agent... you just didn't know!!! You had to pick it up and take your chances, mister!
We didn't have any fancy PlayStation or Xbox video games with high-resolution 3-D graphics! We had the Atari 2600! With games like 'Space Invaders' and 'Asteroids'. Your screen guy was a little square! You actually had to use your imagination!!! And there were no multiple levels or screens, it was just one screen... Forever! And you could never win. The game just kept getting harder and harder and faster and faster until you died! Just like LIFE!
You had to use a little book called a TV Guide to find out what was on! You were screwed when it came to channel surfing! You had to get off your butt and walk over to the TV to change the channel!!! NO REMOTES!!! Oh, no, what's the world coming to?!?! There was no Cartoon Network either! You could only get cartoons on Saturday Morning. Do you hear what I'm saying? We had to wait ALL WEEK for cartoons, you spoiled little rat-finks!
And we didn't have microwaves. If we wanted to heat something up, we had to use the stove! Imagine that!And our parents told us to stay outside and play... all day long. Oh, no, no electronics to soothe and comfort. And if you came back inside... you were doing chores!
And car seats - oh, please! Mom threw you in the back seat and you hung on. If you were lucky, you got the "safety arm" across the chest at the last moment if she had to stop suddenly, and if your head hit the dashboard, well that was your fault for calling "shot gun" in the first place!
See! That's exactly what I'm talking about! You kids today have got it too easy. You're spoiled rotten! You guys wouldn't have lasted five minutes back in 1980 or any time before!
Regards,The Over 30 Crowd
Thursday, June 10, 2010
Even on good days, I still have a trach.
Even on good days, I still can't go most places alone with Jacob.
What irritates me the most (well....mostly the most) is that it is so INCONSISTENT! Like right now....I don't feel too bad, I got plenty of sleep, but my eyes are starting to go already. What the...? I. Don't. Get. It. Other times, I'm so weak I can barely walk, and my eyes are fine.
Sometimes I crash after being way too busy.
Sometimes I just crash. And it drives me crazy. I like predictable. Oh, do I like predictable!!
I used to block out a time in my planner to be spontaneous. (ar ar) I am NOT a spontaneous, fly-by-the-seat-of-your-pants girl by nature. But I have had to come to become one by circumstance. And I resent that.
I resent having my life completely altered by no fault of my own. I resent not being able to do what I want with my son. I resent not being able to choose how many children I want to have. I resent not being able to work part time if I wanted to. I resent not being independent.
I resent having a hole in my neck.
I love my husband.
I love my son.
I love my home and the land we live on.
I love my God and all He has done for me.
I love my family.
I love my friends.
I love the friends I have made only by having this disease.
I love that I love more deeply, more quickly, and forgive more easily.
Sure, I've been knocked down. But I. Have. Not. Been. Knocked. OUT.
Wednesday, June 9, 2010
He did still go to Auntie Shawn's, because I fed him a chocolate chip cookie thinking if he was really sick he'd throw up again. (Actually Shawn's idea to feed him...my idea about the cookie). BUT, I cancelled both of my doctor appointments. He ate the cookie and was still fine 2 hours later, so away he went.
After I dropped Jacob off at NOON, had lunch with my hubby, got into an argument, called Joanna, she took me to Radio Shack to get a new cord for my cell phone booster so I have "real" internet again, and then to the chiropractor, which I wasn't planning on, but needed....then to a coffee shop for an ice cream coffee drink.
So. The day wasn't a total wash. It was very bizarre. Quite emotional. But overall, not bad. Bizarre, but not bad.
The paper won't be at the Council Meeting...ARGH. They blamed the economy. So I got his e-mail and sent him a post I'd like to see in the paper...he said he'd try, and check with his editor. So I'll just keep harassing, I mean, checking with him until it goes in. : ) I can be quite persistant.
Hope everyone is having a healthy day. Hopefully my frustration with my husband will be resolved soon. Ug.
Tuesday, June 8, 2010
Monday, June 7, 2010
Oh my gosh. What an amazing thing. It was so light and tiny and fragile...Jacob wanted to hold it and I was like, um, I don't think so bud! I checked the wings, and they seemed fine...so I asked Doug what he thought. He figured it ran into the side of the barn and was just dazed. I hoped so, because even though there are tons of them, I really didn't want this one to die.
I sing because I'm free.
His eye is on the sparrow,
and I know He watches me.
Friday, June 4, 2010
Joanna's hubby Fred came over and organized my office. He is gifted at this, and apparently LOVES doing it. So here are the results. (The office is "my" room; but it's also the room that everything gets dumped in, because you can close the doors and no one is the wiser!
Thursday, June 3, 2010
You see an overweight person who looks fairly normal park in handicapped and walk normally into a store. What do you think? Lazy.
You see a person parked in handicapped putting her own grocery items in the car. What do you think? I ought to call the police! A real handicapped person needs that space!
You see a person with droopy eyelids walking down the street with a slight drag of the foot. What do you think? That chic is high on something!
You see a person walking around with one eye closed and stumbling around. What do you think?
You see a person, dressed normally, in a restaurant at noon. Her speech is slurred quite badly. She has a child with her. What do you think? Oh my gosh! I can't believe that woman has been DRINKING! At noon, no less! And with a child!You talk to a person at a social event who appears perfectly normal, except for a trach that you assume is from a car accident or previous cancer. You ask her what she does for a living, and she tells you she is on disability. What do you think? It's people like her that abuse the system and make it harder on all of us! I can't believe MY taxes are paying for her sloth!
Well, you would be wrong. Dead wrong. On all counts.
What if I told you that person has Myasthenia Gravis, a horrible, chronic, life long neuromuscular disease that robs a person of her independence. That person has spent countless hours in hospitals, doctors offices, clinics, with needles in her arms, not being able to talk because she has to hold still, and can't use ether hand to cover her trach. That person has been unconscious, on a ventilator, fighting for her life, at the age of 29.
What if I told you that person parks in handicapped because she normally walks out of the store so exhausted she might fall if she had to walk further?
What if I told you that person may have been able to go to the store that day, alone, and carried her paltry 3 small bags to the car (parked in handicapped), but that's the only thing she's been able or WILL be able to do that day?
What if I told you......that person is me.
Wednesday, June 2, 2010
I have been dealing with this disease called MG for about 14 years now. I was not "officially" diagnosed until July of 2003, when a new test for a specific kind of MG (Musk+ MG or MMG) came out. I started having symptoms about 6 months after having chronically infected tonsils removed.
I was hospitalized in October of 2000, where I spent the majority of the next 3 months at the U of M neurological intensive care unit (NICU). Prior to being hospitalized, I had been to dozens of doctors. Most of them told me it was stress, a few told me it was anxiety. One told me it was all in my head.
On October 13, 2000, I had an MRI under sedation. I quit breathing completely, and had to be emergently intubated and resuscitated. Four days later, after numerous tests, EMG's spinal taps, etc., I was flown via helicopter to the university of Michigan hospital in Ann Arbor. I was told later that the doctors were afraid I would not have survived the trip by ambulance. I don't remember much from then until November 1, 2000. I CLEARLY remember two doctors, Dr. Andrea Bozoki and Dr. Ming Hong, who told me all of this was in my head, and if I accepted it, I would get better. If you ever run into either of these doctors, turn and run for your life. Literally. They came up with some corny diagnosis of chronic motor axonal neuropathy, which translates to "fancy name for pain because you're a psycho." They sent me home with anxiety medication and pain pills, and I almost died.It is truly a miracle I am here at all today.
Many things happened to me that should have killed me. First, the carbon dioxide levels in my blood were at levels that should have required a ventilator, yet I was still working full time. By the time they realized this and put my on oxygen 24/7, I literally got high from the initial oxygen because my brain was so starved for it. It is unfathomable, except by the grace of God, that I did not have brain damage (no comments from the peanut gallery, please!) : )Then, while in the hospital, the first 10 days were touch and go. They were not sure I would survive. I contracted staph pneumonia (MRSA), and had to be intubated and removed from the ventilator if I was to survive. It was a long, uphill battle.
I became diabetic from the huge doses of steroids there were giving me to save my life, and was in a wheelchair when I left the hospital. I walked with a walker after that. I also came home on a feeding tube, because I was not strong enough to swallow yet.
The kind of MG that I have, MuSK+, effects about 7 people out of a million. (Okay so I'm not one in a million...) Some of the symptoms are:
*Drooping or even closing of the eyelids from weakness
*Swallowing difficulties, frequent choking
*Weakness of the intercostal and diaphragmatic muscles, which means lying on the back is nearly impossible (if you want to breathe, anyway)
*Hoarseness and changes in voice
*Weakness or paralysis that worsens as the day progresses
*Facial paralysis (all of the muscles in my face were so slack everyone at work kept asking me why I was so angry...I just couldn't smile because none of the muscles worked anymore)*Temporarily absent breathing
*Sustained difficulty breathing
*Drooping head (as neck muscles are too weak to hold it up)
*Difficulty climbing stairs
*Difficulty lifting objects
*Difficulty talking (slurring words, inability to enunciate clearly)
*Difficulty producing the right words when needed
*Overall, generalized weakness
*Weak muscle tone
*Muscle pain (due to atrophy from not using muscles enough)
*Frequent clumsiness and poor balance
*Frequent dropping of items due to weak grip
I can honestly say I have or have had all of the symptoms. It is not fun. A crisis situation (like when I was hospitalized) can occur at any time. A person with MG may be fine when they get up in the morning, and collapse for "no" reason in the afternoon. I have actually fallen off the toilet because my leg muscles just gave out. You don't really think that you're using a lot of muscle by simply sitting on the toilet, but you'd be surprised! (You can laugh, it's funny NOW!)
Before I was hospitalized, my right hand had atrophied so much it was curled up into my body, and I looked like a stroke victim. I had to prop my head up with my elbow on the table because I couldn't hold my head up.
Fast forward: Glory to God, I now have a brilliant, fascinating, perfectly healthy son, Jacob, who will be 3 in August. Having him was the most difficult thing I've ever done. One-third of myasthenic women actually IMPROVE during pregnancy, one-third stay the same and one-third get worse. Yup, you guessed it, I got worse. By my 4th month, I could no longer speak clearly. Because I was so high-risk (35, the MG, diabetic) when I started going to the doctor I had to go every 2 weeks. At 30 weeks I started going every week, and at 34 weeks, twice a week.
Jacob was born with transient (temporary) neo-natal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5. He went home 5 weeks to the day he was born. I bawled every day having to leave him in that hospital...my only comfort was knowing that he would be fine, because as soon as MY antibodies worked out of his system he would be completely healthy. And is he ever! He is the picture of health. Thank you God!
For treatment, I take CellCept, which is actually an anti-rejection drug taken by organ transplant recipients. It lowers my hyper-immune system, and keeps some of the MG symptoms at bay. I also take Prednisone, which has the same purpose. I go to the U of M aphersis lab, and have plasmapheresis, or PEX (plasma exchange) every 3 weeks. During plasmapheresis, they put a needle in each arm, take the blood out through one, run it through a machine (basically a fancy centrifuge) which removes the plasma from my blood, add new, "clean" plasma, warm the blood back up, and put it back into the other arm.
For those of you who donate blood and plamsa, THANK YOU. You have literally saved my life. For those of you that haven't but are able, PLEASE donate. You can truly and completely save a life. Without plasmapheresis, I would not be alive.I have absolutely no doubts that God saved my life for a purpose. And if that purpose is simply to tell others that they can get through hard times, that's what I will do. I never thought I could have a child. I never thought I could raise a child. But trust me, "ALL things are possible for him who believes."
If you are interested in supporting Myasthnia Gravis research, you can check out the Myasthenia Gravis Foundation of America website at www.myasthenia.org
I would like to say one last thing: If you or someone you know has a chronic illness, you can do one of several things: first of all, pray for them. Being chronically ill is lonely, isolating and depressing. If you can't always "see" their illness (many times, other than the trach, I look perfectly normal) please don't assume they are crazy, or nothing is wrong with them. You have no idea the hell they may be going through. Secondly, and very importantly, please don't judge. We are not just fat, lazy, unmotivated people who park in handicapped parking because we can't waddle to the front door. We are, first and foremost, people. People like you, who are just a little different. People who are dealing with excruciating circumstances, and may not have the energy to walk to the car after a trip around the store.
Thank you for taking the time to read this, and please join me in praying for a cure.